Another Lumbar Puncture

Well it's Monday and we are back in Stanford once again. Jillian is scheduled for another lumbar puncture as i stated in the last post. They want to give her chemo in her spine as preventive maintenance. This is the fifth time she will be put under which sucks since its only been a few weeks since her whole treatment started. Shes in high spirits even though she hasn't been able to eat anything since 6 last night. We keep on distracting her in hopes she will forget she is hungry. My good friend Teresa came up with us today to keep us company. Its been great spending time with her!

So i am writing this post on a brand new iPad that my amazing Tia Ruby and cousin Rosa bought for Jillian for her doctors visits. This thing is amazing and Jill and I want to say thank you so very much for the super extravagant gift! We love you all so much. Cant wait to spend more time with you all. Jilly misses MIa and soon we will have a girls date night! "I thaid i was thorry!" lol

The rummage sale this weekend went amazing. Thank you to everyone who either dropped anything off or went shopping. We couldn't be happier with the turn out. And remember this saturday is the Dance for JIllian Fundraiser at Tantrum Fitness. Go and take a class or go to win some amazing raffle prizes and there will also be a blood drive going on with a local truck there for anyone who wants to donate some well needed blood! We are hoping to be able to go this weekend so if you want to come see the amazing JIllian she will be there!

We should be getting some blood results back today since they did lab draws. I will let everyone know how her numbers are going when i know. Shes been doing so well so we are hoping for some good numbers!

Remission.... Why yes we are!

We are still here in Stanford getting Jillian's first dose of chemo for her second phase. I was unaware how long this dose would be so we probably will not be leaving till late. She has to get a lot of fluids along with the chemo so that's why it will be a longer day. This chemo is given on the first and last day of this phase. I'm glad we have company though!

We spoke with the doctor about her results on remission and she told us that Jillian is indeed in remission! How amazing it is to get these results. All her numbers went up this week as well. Even her hemoglobin so no transfusion for her. I can't believe how amazingly well Jillian is doing. Her ANC went up to 1700 so thats great too! Since we are now in remission it is our job to keep her this way. I have heard of children who have never relapsed from their first remission and it is my goal to make sure Jillian is one of those children! Her cancer will be gone for good and will never return. This phase of chemo looks like it will be an easier 28 days. She will still remain on dasatnib and I will also be giving her another chemo once a day for the month. She stays on septra for the weekends and there is a new drug they will have me administer at home. Four days a week I will have to poke her which I'm not super looking forward to but we will manage. The chemo she will be on for the month requires her to take on an empty stomach and he can't eat anything for an hour after. I think I'm looking forward to that medication less than poking her. She loves to eat and even though she is not on her steroids anymore she still has a healthy appetite. So it will be fun telling her she can't eat so I can give her her meds.

We come back to Stanford on Monday for a lumbar puncture to give her some chemo in her spine. It's a normal scheduled procedure but I was unaware we would have to be back so soon! No big deal but it will be another long drive. So far Jillian is doing awesome. Her central line is looking great and the doctor says everything is perfect! Thanks for all your prayers!

Don't forget that Jillian's rummage sale fundraiser is going on tomorrow at tantrum fitness in Grover beach. If anyone has anything they want to donate they can bring it to tantrum fitness or they can go shopping tomorrow! Thanks everyone!

Here's Jillian today getting her chemo and with her new bear Cinderella. She's such a trooper!

Pacific Christian

I gave thanks today to Jillian's cousin Mia's school for sending Jillian an awesome book full of get wells and god blesses. We got to fully go through it tonight and Jillian had so much fun looking at all the pictures. Every single child and adult who took time to make this for her is truly fantastic. Thanks so much again to everyone! Here is Jillian enjoying going through the book with her cousin and some fun pictures of our day today. She came out of surgery so great and was even up for a mall visit. Can't believe how well this child takes all her procedures. Where were to complications and her PICC line is out and her central port is in. We go back tomorrow for other procedures and results from her bone marrow biopsy and lumbar puncture.

Oh one of the pictures she took with a worker at the build a bear workshop. The kids got to make a bear today and they had such a great time. Brenda, the worker, was told by my cousin why we were here and Jillian's treatment she had this week. Brenda was such an amazing employee she took Jill over to the pj section and had her pick out some pjs and a blanket set for free. She said Jill's bear had to have pjs for when she was in the hospital. People like Brenda really make you realize how amazing people can be. It was such a caring thing she did for Jill and Jill was super excited. Thank you Brenda over at build a bear at hillside shopping center. You truly made my daughters day a bit brighter!

Central Line

Jillian is officially under anesthesia right now. We drove up to Stanford last night because she had a 715 appointment. It was so adorable seeing her out under, she was giggling and smiling and then she was out. Each time she goes under it get a little easier. She responds really well to anesthesia so I'm praying this time is like the others. The only difference is this procedure is a little more intense than the others. She will be getting a tube down her throat this time around. Hoping they remove it before she wakes up. I know everything will go wonderfully and when it does it will be so much easier on both of us to take care of her line. I'm looking forward to not flushing her lines everyday. It's so stressful that they put those responsibilities on parents but i know its our job.

We came up last night with my cousin rosa and her daughter Mia. The company was great and Jillian had so much fun in the back seat with Mia. Mia's school made Jillian this AMAZING book that all the kids contributed to. Lots of pictures and just well wishes. It was so awesome to see and to realize all the prayers and thoughts she is getting from everywhere. Thank you all so much for the book. It was such a fantastic gift. I will post pictures of it soon! Mia is such a great cousin, she has been raising money on her own for Jillian. It's the sweetest thing to have children her age (7) want to help Jillian. Jilly is so loved.

This procedure should take about an hour. Daniel was not able to come up with me this time since his week on started today. We miss him when he is gone and its tough having to be the parent who does all this. Jilly misses him when he is not here but we know he is where he needs to be in order for Jillian to receive all this treatment. Somebody has to work. I'm lucky that I am a stay at home mom and I am able to be here with her without any worries. I couldn't imagine doing all this and having a job. It's a job in itself and I'm exhausted!

We will be here for another day. Jillian has clinic tomorrow and she will start her second phase of chemo. The break off was nice but we have to get back to it. We received blood results back from when she was tested on Tuesday. Her ANC went down to 1400 but its expected. It hard to see her numbers go lower but 1400 is still good. We have to stay positive. Her hemoglobin was low and they considered giving her a transfusion which meant heading up to Stanford earlier. They asked me how her behavior was and the night before she was having a dance party with my mom, so hearing that they decided she would be fine until we came up today. It was super funny. This girl is amazing. Even when her counts are down she is still full of life. Her white blood count went up which is always good and her platelets stayed the same. Even though we had some lower numbers I am still happy with how she is doing.

I will continue to update you all today on her progress. I leave you with the most recent pictures I have of the last week. She had a great one but its time to get back to business. I know she's going to rock this next phase of chemo.

Back to school

Well we are back to the grind. William is back to school (and did so amazing today) Jill unfortunately is not back to school but we are back on the same schedule for a few days. It was so nice to get back to a normal day. I actually got to take William to school and pick him up. It was so nice to see everyone at school and feel normal again! I'm so happy he had a great day.

Jill and I got to visit her school today and see some of her friends. She loved seeing miss Sheere and we got to spend a little time there coloring. She misses school but knows it will be a while before she will be able to go back. She had a good day today. We went to lunch with her grandma and she is actually staying the night there tonight. Which means a good nights sleep for us. She had blood work done today which we haven't gotten results back from yet. They did a lot of testing on her blood and I have a feeling they are checking to see where she is at with being off chemo for a few days. Still no results from her tests. Hopefully soon! I'm going crazy wondering what the results are. We got a call today from the hospital saying our insurance approved testing for Daniel, will and I. We will be getting tested to see if any of us are bone marrow matches for Jillian, just in case. It will be good for us to know if we are matches if she ends up needing a transplant. If we are not then we will have time to look. Best case scenario is Daniel or I are a perfect match. I would rather us be matches then William. But he is her best chance. Prayers prayers prayers! Jill's appointment is scheduled for Thursday for her central line. My cousin and her daughter are coming up with us for a few days and were excited to spend some time with them! It's going to be a great week.

Well I have to say a super big thanks to bev and Megan for the dinners they prepared for us. All of it was truly amazing and its so exciting getting to see what is in store for us every night. Thanks so much! Everything was amazing.

Lake Tahoe

What a day today. We have had the best time just enjoying the snow and relaxing. The kids are so happy here. It's hard to imagine going back to all our responsibilities at home. If only we could forget all our problems and stay here forever :-) we rode the gondolas today and surprisingly neither of the kids were scared, I happened to be the only one who didn't really enjoy it. I am very forgetful of the fact that I get motion sickness and have a slight fear of heights. So I basically sat there with my eyes closed while jilly and Daniel laughed at me. :-)

We walked to all the shops downtown at the state line and took the kids to one of the arcades in a casino. Every year we come here we always bring them to the same arcade and they love it. It was fun playing all the games with them. After the arcade we took them to make a snow man because that is what Jill wanted to do the whole time. Since we do not live in snow and rarely ever see it we underestimated how difficult it would be to actually make one. And how cold snow is! So we attempted to make our own and after freezing our butts of I noticed a ready made snow man hiding behind a tree. So we did a little touch ups and called it our own! Both the kids loved him and we got to leave the freezing cold early. Now we are back in the room just relaxing. Not sure what we have planned tomorrow yet. We may just come home or just stay another day. Who knows.

As far as Jill goes her health has held up and no fevers! Yay. She complained of a tummy ache last night but we think she just ate too much for dinner. She is still eating like she's on steroids and now I think it's catching up to her. She was great today and no big issues. So happy.

What a weekend!

For Jillian's week off chemo we decided to make it the best one yet! Since we were already up north and all jilly talked about while she was in the hospital was the vacation house we took the extra drive up to Lake Tahoe. We come here every year in September and Jillian loves it here. The great thing about this time of year is that it is snowing! The kids were so super excited to see the snow and already have been playing in it. My amazing wonderful awesome Uncle Terry and Aunt Cindy were able to get us a suite at the Stardust which is basically in the heart of downtown. It is super nice and will and Jill love it here. We got in a bit late and weren't able to do much today but tomorrow we plan on taking them to play in the snow and ride the gondolas along with many other things I'm sure. It was such a spur of the moment trip (which sometimes turn out to be the best ones) and I am so excited we just said to hell with it and came. The excitement on the kids faces are well worth all the effort and long drive.

We had planned on going to San Francisco today and in a way we did. We drove through fishersman warf and Daniel got to see the giants stadium which he totally loved. Daniel highly enjoys going to the city since he was born and raised in Houston he misses the big buildings. I think he fell in love with San Fran but I'm not much of a city girl. The traffic alone drives me nuts. We got to drive on the bay bridge and the kids were so in awe. One more thing to check of the family bucket list! For the most part we just checked out the city on our way to Tahoe. Since we decided to come up here we didn't want to spend too much time in SF. We will eventually make our way back if Daniel has any say.

Today our awesome family and friends in Texas through Jillian a fundraiser there. From the looks of all the pictures they had a blast! I can't believe how much support and how amazing all our family are there. Jillian is so lucky to have people who care about her from everywhere! The fundraiser went amazingly and they raised a ton of money to go into Jillian's account. Thank you all so much from all of us, the amount of work everyone put into the fundraiser was insane. I LOVE LOVE LOVE all the shirts you made for her. Please send me one! :-) I hope one day soon when Jillian is all healthy we can make another trip to Texas to come visit everyone. She deserves to meet all the fantastic people who thought of her when she was sick. Thank you so much! Christine please send our gratitude to everyone who participated. We love you all.

I will post pictures of our mini vacation as we go. We are so happy to be able to take advantage of Jillian's week off any major treatment. She is feeling great, keep those prayers coming for no fevers. I hope everyone is have a fantastic weekend!